The Euthanasia Law does not provide protection to people with dementia and psychiatric problems, says Boudewijn Chabot. “Silently, the foundation of the law is being eroded.”

Boudewijn Chabot is a geriatric psychiatrist and researcher of voluntary end-of-life choices.

About twenty years ago, I was sitting on the bench for the accused in the High Court. This was ten years before the adoption of the Euthanasia Act, after I had given a fatal drink to a 50-year-old, physically healthy social worker. Judgment: ‘guilty without punishment’. I fought – and fight- for self-determination. However, I am now worried about the rate at which euthanasia is performed on demented and chronic psychiatric patients.

Recently, the third evaluation of the Euthanasia Act, which came into force in 2002, came out. And like the previous evaluations, the tone was positive. “The goals of the law have been realized. All actors are satisfied about the content and functioning of the law.” That sounds all very well, but it’s not. Since this contentment hides problems which the researchers fail to mention.

To understand what has gone wrong, the reader must know the three most important “due care criteria” of the law. There must be: 1) a voluntary and deliberate request; 2. unbearable suffering without prospect of improvement; 3. No reasonable alternative to euthanasia.

The second and third requirements are closely linked because if another solution, such as specialist palliative care, is indicated, the suffering is not without prospect of improvement. If the patient refuses that option, the physician will not be convinced of the “unbearable” nature of the suffering and will not provide euthanasia.

At least as important is what is not in the law. There is no requirement that the disease has to be physical, and the doctor need not have a treatment relationship with the patient. Many doctors and lay people thought this was the case. But such restrictions are deliberately omitted to allow for the development of concepts such as “unbearable suffering without prospect of improvement.”

In the last ten years, the number of euthanasia reports has increased from two thousand to six thousand per year. People ask for it more often, doctors are more often willing to provide it, and consultants who assist the doctors give more often the green light. In 2016 the review committee found that only 10 of the 6,091 (0.16 percent) cases was done without due care.

All of this indicates a shift in culture in relation to self-selected dying under the custody of the doctor. Apparently doctors heed the increasing demand for euthanasia in the context of all kinds of nasty diseases, particularly cancer. In and of itself, this increase does not disturb me – even if the number exceeds ten thousand in a few years.

What does worry me is the increase in the number of times euthanasia was performed on dementia patients, from 12 in 2009 to 141 in 2016, and on chronic psychiatric patients, from 0 to 60. That number is small, one might object. But note the rapid increase of brain diseases such as dementia and chronic psychiatric diseases. More than one hundred thousand patients suffer from these diseases, and their disease can almost never be cured. Particularly in these groups, the financial dismantling of care has affected patients’ quality of life. One can easily predict that all of this could cause a skyrocketing increase in the number of euthanasia cases.

Strikingly, doctors from the End of Life Clinic Foundation* are often euthanizing these patients, while as a matter of principle they never treat patients for their illness. By 2015, a quarter of euthanasia cases on demented patients were performed by these doctors; in 2016 it had risen to one third. By 2015, doctors of the End of Life Clinic performed 60 percent of euthanasia cases in chronic psychiatric patients, by 2016 that had increased to 75 percent (46 out of 60 people).

There appears to be a realization that something is going wrong, because the review committee has recently been strengthened with a few specialists in the field of geriatric medicine and psychiatry. However, their vote will be lost in the choir of the forty-five commissioners who are responsible for the current ‘jurisprudence’.

These figures also cannot be found in the annual report of the committee or in the statistical tables of the researchers. For sure, the fact that in 2016 euthanasia has been granted to a total of sixty psychiatric patients is included in the annual report of the review committee. But nowhere in the report is it mentioned that in 46 of these cases, it was a physician at the End of Life Clinic who granted the request. That number you have to dig up from the annual report of the End of Life Clinic. Is this fog purely coincidental?

Cornerstone of the law

Is it still possible to put a break on this development? It won’t come from the review committee, which cannot go back on its ‘case law’. Already back in 2012, at the time of the second review of the law, it became apparent that the review committee no longer discussed whether the due care criteria of “unbearable suffering without prospect of improvement” were fulfilled. The committee members found this difficult to evaluate, as was already apparent from the previous review of the law: “If the notifying physician and the consultant found the suffering to be unbearable, who are we to say something more about it here?”

The interpretation of this cornerstone of the law already came down to what the doctor and consultant accept as unbearable suffering without prospect of improvement.

This is also clear from the reviews. In 2016, the committee found in only one of the 201 cases of euthanasia in dementia and psychiatry that the evaluation had been careless [not in line with due care] because the requirement of “unbearable suffering” had not been met. What problem is this evaluation structure, which costs about four million euros annually, really solving? The researchers fail to answer this question.

Once upon a time, moving to a nursing home or receiving treatment with some medication was still considered a “reasonable alternative” for euthanasia. At least it had to be tried. Many doctors now accept that a patient can refuse a reasonable alternative and that this does not create a barrier for euthanasia. That brake has now also disappeared.

In the Chabot judgment, the Supreme Court had still required “exceptionally great caution” with respect to psychiatric patients. Those words are now trite, because a reasonable alternative to death can now be refused and the committee will still provide its stamp of approval that the euthanasia was done with due care. This has been the case for many years, since already at the time of the previous evaluation of the law the majority of the review committee did not find that doctors were too easily accepting that patients reject a reasonable alternative.

Within the End of Life Clinic, a group culture has emerged in which euthanasia is regarded as virtuous labor

Ethicist Govert Hartogh, who has for many years been a member of the Evaluation Committee, has identified this subtle but steady process of erosion: “The patient suffers unbearably when he says he suffers unbearably and an alternative is not a reasonable alternative if the patient rejects it. In fact, these requirements then add little to the requirement of a voluntary and thoughtful request.”

The erosion of nice words reminds us how it has gone with the abortion law. In order to get abortion, a woman had to be in an “emergency” situation. Soon every woman knew that she got what she wanted if she requested it and rejected any other solution. The Dutch legislature has often been creative in areas of morality, with big words that, after a while, completely lost their bite. Consider the “enduring disruption” that was required for divorce.

The fading of legal requirements does not have to be a problem. Sometimes this leads to an amendment of the law, such as with “enduring disruption.” Sometimes we also accept that the core idea behind the law has shifted to favour self-determination, such as in the case of abortion. The problem is, however, that the euthanasia committee continues to speak of “unbearable and hopeless suffering” in its annual reports, as if these words still really have great weight.

While researchers are pointing to the growing emphasis on self-determination, they fail to mention the erosion of the two other legal requirements. Silently, the very foundation of the law is eroded.

The doctors working within the End of Life Clinic consider themselves at the “forefront” and call the clinic a ‘centre of expertise’. Unfortunately, there is very little expertise in palliative care, for the simple reason that when a patient rejects treatment it is accepted as an expression of self-determination.

In 2016, about 40 physicians working part-time at the End of Life Clinic performed euthanasia 498 times. On average, this amounts to 12 euthanasia’s per doctor, one per month. Within the clinic, a group culture has emerged in which euthanasia is considered to be virtuous labour, especially in severe dementia and chronic psychiatric patients. The fact that the End of Life Clinic also rejects many requests is thereby irrelevant, since many people who do not at all qualify for euthanasia contact the clinic.

What happens to doctors for whom a deadly injection becomes a monthly routine? They are surely well-intended, but do they also realize how they are fanning a smoldering fire that can become a blaze because they fuel the death wish of vulnerable people who are still trying to live with their disabilities?

The End of Life Clinic is now actively recruiting psychiatrists. It justifies this by pointing to the long waiting list. Their task: relieving the unbearable and unrelievable suffering from psychiatric patients through euthanasia. Every time the Clinic is in the news, a wave of depressed patients whose treatments are allegedly exhausted but many of whom have never been properly treated report to the Clinic. Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription business, good treatment has become scarce.

The newly recruited psychiatrists won’t need to enter into a treatment relation with the patient. The evaluation committee has accepted that in the case of severe physical illnesses. Now it has also applied this to incurable brain diseases—without discussing it with members of the psychiatric profession by the way.

Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription industry, good treatment has become scarce.

This has been an overly hasty step. Without a therapeutic relationship, by far most psychiatrists cannot reliably determine whether a death wish is a serious, enduring desire. Even within a therapeutic relationship, it remains difficult. But a psychiatrist of the clinic can do so without a therapeutic relationship, with less than ten ‘in-depth’ conversations? Well …

With dementia there is another concern. The Euthanasia Law has added that a written letter of intent may replace an oral request, while the other due care criteria remain applicable. According to ethicist Den Hartogh, this implies that for a demented patient, two of the three due care criteria disappear—the requirement of a well-considered request and the requirement that reasonable alternatives have to be tried—because they cannot be applicable.

What remains is the requirement that there should be unbearable suffering that cannot be alleviated. But it is often very hard to determine whether there is unbearable suffering in advanced dementia, as five professors of geriatric medicine recently stated in NRC. The personal colouring of ‘suffering’ in dementia plays a major role.

Yet, that uncertainty doesn’t appear to be a problem for the review committee. When a physician and a geriatric specialist note in their report that a person with dementia suffers unbearably, the committee may occasionally ask a question about that, but it doesn’t cause any further problems.

With the erosion of the concept of “unbearable suffering” and the determination that a written consent is the same as an oral request, the door has been opened wide for euthanasia of patients with severe dementia.

Yet, we still face a formidable obstacle in the context of severe dementia: how do you kill someone who does not collaborate because he has no realization of what will be happening? Already in 2012, NRC described how this works. A spouse mixed sleep medication in the porridge of his demented wife before the GP arrived with his deadly syringe. At the time, the review committee failed to mention anything about this assistance. In later cases of euthanasia with advanced dementia, the committee also remained silent about the precise details of the execution.

In 2016, there were three reports of euthanasia of deep-demented persons who could not confirm their death wish. One of the three was identified as having been done without due care; her advance request could be interpreted in different ways. The execution was also done without due care; the doctor had first put a sedative in her coffee. When the patient was lying drowsily on her bed and was about to be given a high dose, she got up with fear in her eyes and had to be held down by family members. The doctor stated that she had continued the procedure very consciously.

Thus, a doctor can kill someone surreptitiously, because you cannot resist after being sedated. If necessary, physical force is used. A large group of doctors called this “sneaky” and published a full-page advertisement, including in NRC, letting our society know that they will not do this.

History repeats itself

In the third review of the law we can find the following remarkable sentence about the surreptitious administration of a fatal drug: “This can in those cases be inherent to the nature of the situation and has not been previously considered a problem.”

The surreptitious administration of medication has previously occurred, but has never been mentioned in an annual report. That is odd, because the committee queries doctors relatively frequently about the medications they administered and judges deviations from the Euthanasia Directive relatively frequently as careless. In a deeply demented person, we are dealing with a morally problematic act: how do you kill someone who does not understand that he will be killed? Remaining silent about the precise way of execution appears very far removed from the transparency that the committee expects of doctors.

The researchers compare this form of cover-up to be “inherent to the nature of the situation”. When it comes to the killing of a defenceless human being, everything that is deemed “inherent to the situation” should be very clearly identified in the evaluation and in the annual report. The review committee has failed in transparency, for five years now. And the researchers smoothen this out.

Would the Public Prosecutor’s Office now take up its responsibility after being laid back about it for fifteen years, and submit the case to the court? Earlier, when the review committee considered in one euthanasia case that due care had not been met for all three legal requirements, the public prosecutor failed to prosecute.

In the context of severe dementia, the following legal questions can only be answered with authority by the Supreme Court: can people be killed surreptitiously? Isn’t that a form of duress, since any possible resistance is being prevented? Isn’t it precisely when we’re dealing with a defenceless person that any hint of coercive force must be avoided?

In the case of the woman who got up with fear in her eyes, the public prosecutor can launch an appeal in the interest of the law. He can then submit the matter directly to the Supreme Court. I think that the public prosecutor will very likely take a wait and see approach. In that case, geriatricians, for whom clarity on this legal question is of utmost importance, can appeal the decision not to prosecute in a court of law.

History repeats itself when it comes to laws dealing with challenging ethical issues. Self-determination around the end of life is for many people as important as in the context of abortion. It is therefore not surprising that the first due care criterion, a voluntary and well-considered request, has gained in importance. And that criterion has pushed the other two due care requirements to the margins. What is astonishing is that in the third evaluation of the law, the researchers still keep up the smoke screen around ‘unbearable suffering without prospect of improvement’.

Where did the Euthanasia Law go off the tracks? The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.

I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.

(*note translator: The End of Life Clinic (official name: Stichting Levenseindekliniek) offers access to euthanasia to patients whose own physicians have denied their request for euthanasia. For more information on the organization, click here)

The Monday evening NTR broadcast of the documentary about the End of Life Clinic shows, according to Victor Lamme, professor of Cognitive Neuroscience, that the Dutch euthanasia practice is on a slippery slope.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things, “De Vrije Wil Bestaat Niet”

In a documentary broadcast Monday by NTR, the End of Life Clinic very proudly presented three cases of euthanasia. Excerpts of this documentary had been shown earlier in the programme The World Keeps Turning, where the clinic’s work was highly praised; how ‘beautiful’ it all was. ‘Horrible’ seems to me the more appropriate term.

The euthanasia doctor found in her pronunciation of the word ‘huppakee’ sufficient evidence for a clearly present desire to die

It has become very clear now that the Dutch euthanasia practice has landed on a slippery slope and is now used to solve very different problems than unbearable suffering. A most obvious case in point was that of Hannie Goudriaan, a woman with semantic dementia. This woman had written a will in 2010, in which she had declared that she no longer wanted to live if as a result of her dementia she would no longer know who she was and would be housebound. The End of Life Clinic decided that this point had been reached. They got strong support from the husband, who spoke for her.

Anyone who has seen the documentary could feel the pressure Hannie was under to stick to her once completed advance directive. She was able to drive, visit a skating competition, and have a drink in a pub. But her husband had no intention to visit her if she would end up in a home, and the euthanasia doctor found in the pronunciation of the word ‘huppakee’ sufficient evidence for a clear and present desire to die.

The disappearing desire to die

Should we keep people with dementia to their previously completed Living Will? Many people resent the prospect of dementia. It is therefore increasingly common to prepare an advance directive like Hannie did. What is thereby forgotten is that once that time has come, this desire to die most often disappears, and demented elderly are often far from unhappy.

A comparable situation – and easier to investigate – is that of patients with locked-in syndrome, a brain injury that causes total paralysis and whereby people can only blink their eyes. Nearly every normal person says that if he would ever end up in this situation, he would like to put an end to his life. It appears, however, that these patients rate their quality of life on average with a 7, similar to the score given by the average student. People simply adapt very quickly to a new situation, how miserable that situation may be.

In addition: dementia changes the brain. He or she thus becomes literally a different person; with other norms, feelings, and desires. He is then simply no longer the person who signed at one point in the past the advance directive. To hold demented people to their living will is as weird as saying to an 18-year old that he must become a fireman, simply because he said that once when he was eight years old. People change, and nowhere faster than in the context of dementia.

Euthanasia Marketing

Finally, it is highly questionable how ‘free’ people are when they complete such an advance directive. The pressure on the elderly is continuously increasing. They are being told that health care costs are being wasted in the last years of life, and that they wouldn’t want to be a burden on their children. And that it is really so very ‘beautiful’ to take matters into your own hands.

The elderly are being told how ‘beautiful’ it is to take matters into one’s own hands

That kind of social pressure can become very forceful, consciously or unconsciously; and there is ample scientific evidence for that. Do not underestimate at all the power of the “euthanasia marketing” of recent years, with associations like “Uit Vrije Will”, which do not shy away from using marketing ploys such as the use of celebrity endorsement, proudly displaying Dutch celebs like Hedy d’Ancona, Mies Bouwman, Frits Bolkestein and Dick Swaab on their websites. That way it becomes more or less the norm to end your life when it becomes somewhat less appealing.

What problem is euthanasia really supposed to solve? Elderly take up time, and demand money and effort, which modern society doesn’t want to muster. In the same NTR broadcast we see the centenarian Ans, who fully enjoys a day at sea. Her suffering mostly consist of the fact that no one takes her there anymore. Except on that last day.

It all comes eerily close to the famous scene from the science fiction film Soylent Green, where elderly people are encouraged to commit euthanasia after seeing a movie about how beautiful life on earth once was, a long time ago.

When Hannie gets the lethal injection she says ‘it is horrible’. It is the first time she says something else than “huppakee.” Her last words touch the essence.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things “De Vrije Wil Bestaat Niet”.

[I translated this op-ed using google translate as a rough basis to save time, then corrected and improved the translation based on the original Dutch version]

It’s Euthanasia week. Monday, February 15 NTR broadcasted a documentary “End of Life Clinic” which caused a huge uproar in the (social) media.

Chris Rutenfrans, opinion editor of the Volkskrant. February 17, 2016.

Her doctor refused euthanasia because he never heard from her that she wanted euthanasia or wanted to die.

It is highly questionable whether Marcel Ouddeken and Hans Kema have done a favour to the support for euthanasia with their documentary “End of Life Clinic.” The broadcast by the NTR Monday has evoked so much horror that it could very well be a turning point in the euthanasia debate. Former journalist Wouke van Scherrenburg posted on Twitter: “I’ve dreamed about that woman in the chair and it was a gruesome dream.”

The viewer sees three cases of termination of life by a doctor at the End of Life Clinic, an institution that handles death requests of those whose requests are refused by their family physician (GP). The euthanasia of Hannie Goudriaan touched a particularly sensitive nerve, as is apparent from the responses. Hannie Goudriaan suffers from semantic dementia, a form of dementia that primarily affects the speech center in the brain. Her ability to verbally express herself is limited, and is in the documentary largely restricted to the expression “huppakee, gone!”

Her life is terminated on the basis of an advance directive from 2010. It is very obvious that she doesn’t know anything anymore about this. Her family physician has refused euthanasia because he has never heard from her that she wants euthanasia or that she wants to die. He says that he has not been sufficiently supported by the SCEN-physician [note translator: SCEN is the official Dutch Support and Consultation Service for Euthanasia] and the neurologist he consulted. But the doctor of the End of Life Clinic maintains that in the seven conversations he has had with her, she has made it clear to him that with respect to her wish to die by euthanasia, she “knows what she wants.”

Hannie receives, seated in a chair, a lethal doses of medication. Her death takes place in front of the camera. Hans Beerekamp writes in the NRC Handelsblad on Tuesday: “The images of how she receives a lethal injection seated in her armchair at home will be shown around for years to come, at home and abroad. In the Netherlands, the formula ‘Huppakee. Gone” now counts as a valid expression when establishing consent, and for determining the presence of unbearable and hopeless suffering.”

This is clearly not an emergency situation of hopelessness. The weekend before her death, you see Hannie Goudriaan enjoying a day at Thialf [note translator: a skating ring] in Heerenveen. You also see how she skillfully drives her car while her husband, who insists on the termination of her life, sits next to her passively, as he has done for 35 years.

Execution

Rob Bruntink, a palliative care expert, writes on his blog Bureau MORBidee: “Never before have I seen a euthanasia that looked like an execution. A slaughter. But the husband found it beautiful. And the doctor found it worthy, “because she didn’t snore in the process.”

Bruntink says he can imagine that this documentary can represent a turning point in the thinking about euthanasia in the Netherlands. “Many people call this outright murder. I got a message from my mother with the question ‘was this real or was it fake?’ That is, I think, illustrative of the astonishment this broadcast evoked across the country. ”

Bruntink himself avoids the use of the term “murder”, “because it keeps the discussion away from what it should really be about: do we as a society really want to go in this direction?”

He believes that the supply of euthanasia creates the demand and that it makes other options superfluous. He is convinced that palliative care, where pain management and relief of suffering are central, is less well developed in the Netherlands because of the option of euthanasia.

His work in hospices, specialized in terminal care, have taught Bruntink that people have difficulty judging what they can handle in the future. “At the hospice, they often arrive waving their euthanasia requests, but only one in a hundred will also receive euthanasia. The others find again and again that life is still quite bearable. You could say that euthanasia prevents that people continue to mature.”

Euthanasia prevents that people continue to mature

Bruntink finds the report of the Advisory Committee Completed Life chaired by Paul Schnabel encouraging: “It says that we should worry about each other and increase investment in health care for the elderly, especially for people with dementia and chronic psychiatric patients.”

Chris Rutenfrans is opinion editor of the newspaper.

[Translated by me (TL) with google translation for a rough basis to save time, then correction and improvement of the text]

]]>https://trudolemmens.wordpress.com/2016/02/27/they-often-arrive-here-waving-their-euthanasia-declaration/feed/0trudolemmensutorontocaScreen Shot 2016-02-27 at 12.58.32 PM.png“Psychological Suffering is Never Trivial” (translation response letter)https://trudolemmens.wordpress.com/2015/12/14/psychological-suffering-is-never-trivial-translation-response-letter/
https://trudolemmens.wordpress.com/2015/12/14/psychological-suffering-is-never-trivial-translation-response-letter/#commentsMon, 14 Dec 2015 22:30:28 +0000http://trudolemmens.wordpress.com/?p=76Continue reading "“Psychological Suffering is Never Trivial” (translation response letter)"]]>This is a response to the letter by Johan Braeckman et al., which itself was a response to a letter by Ariane Bazan et al.. in which the authors argued that the Belgian legislator ought to remove the option to request euthanasia purely on the basis of psychological suffering. This response was published in De Morgen on 14/12/2015

(Google translation was used for a rough basis, and I corrected the text based on my own knowledge of Dutch–my mother tongue)

“Don’t trivialize psychological suffering,” Johan Braeckman and others write in response to our open letter, and this is about the best possible outcome we could have expected. It is the very essence of our argument.

We must, however, qualify the distinction objective/subjective as put forward in the response by Braeckman and others. Psychological suffering is obviously a subjective experience, that is clear, but a mental illness is always more than just subjective. The way the illness relates to objective factors is different than in the case of physical disorders. There is no tissue damage, no detectable degradation process in the brain: you cannot see in an autopsy if someone had a depression or not, which you can, for example, in the case of dementia.

But, contrary to what our critics suggest, brain scans do show changes, for example when someone suffers from depression. What is important is that these changes are functional and dynamic: what they show depends on when the scan is taken. They don’t have the irreversible character of tissue damage. Herein lies the fundamental difference with the subjective suffering in the case of physical ailments: you can objectively determine an irreversible process that underlies this suffering.

The person who plunges into a depression falls prey to a real feeling of lack of perspective. Clinical and research experience show, however, that even a succession of major depressive episodes doesn’t imply that the suffering is hopeless.

Suppose someone says, “I have failed in all areas of my life, professional, personal, familial,” and the therapist thinks otherwise on the basis of various specific elements that the patient previously mentioned. Is the only way to avoid being paternalistic or pedantic to simply respond to this patient: “Yes, You are right.”? No, the therapist will both respond to the reality that the patient experiences while also gently suggesting other angles. Clinical care is empathic, indeed, but it is also thoughtful empathy, which involves a gentle invitation to entertain a different perspective. Here, clinical ethics requires to be receptive to the feeling of hopelessness and to acknowledge it, without abandoning the ethical duty to also explore the horizon of other options.

Not trivializing psychological suffering means precisely this: taking account of its uniqueness. The course of a cancer is indifferent to the way the oncologist listens and speaks. Research shows that with mental problems, the relationship between patient and therapist is a decisive factor for the success of the treatment. That constitutes the fundamentally different reality of mental illness. The patient who suffers psychologically is fundamentally attached to the words of the therapist, while the cancer does not care about what the oncologist says.

This brings us to the crux of the ethical basis of the euthanasia legislation: the centrality of the value of autonomy. Testimonials from euthanasia cases involving patients with purely psychological suffering indicate that patients sometimes ask at the last minute: “You are sure, doctor, aren’t you, that nothing more can be done to help me?” Or “You really can confirm that my disease is incurable, isn’t it doctor? ” (see for example the case of Christophe, Knack, 10.22.2014).

This shows how the will of the patient is neither purely autonomous, or undivided, nor unambiguously expressed. In order to recognize the autonomy of a patient, you have to take into account how the will is divided and always probes what the other wants. The patient becomes far more articulate when she is empowered to explore the broad spectrum of her will, with the support of the therapist who continuously invites her to do so. The role of the therapist is in other words never that of a neutral expert who merely confirms the patient’s choice.

Obviously, this problem presents itself in the context of every euthanasia request, but in the context of physical conditions there is an unambiguous limitation as a result of objectively determinable irreversibility. This crucial containment factor is missing here. We are therefore concerned about how the law assigns a position of medical expert to the doctor in the context of issues that primarily concern interpersonal relations. The debate about euthanasia on grounds of mental suffering alone cannot be settled simply by referring to the virtue of diligence and the value of autonomy. Moreover, it is precisely because of the importance of autonomy as a core value that we have to be very careful with how we assign in our legislation an exceptional position to experts.

Even those who are deeply concerned about the right to self-determination should be sensitive to these concerns.

]]>https://trudolemmens.wordpress.com/2015/12/14/psychological-suffering-is-never-trivial-translation-response-letter/feed/2trudolemmensutorontoca“Don’t Trivialize Psychological Suffering” (translation response letter)https://trudolemmens.wordpress.com/2015/12/14/dont-trivialize-psychological-suffering/
https://trudolemmens.wordpress.com/2015/12/14/dont-trivialize-psychological-suffering/#respondMon, 14 Dec 2015 22:02:08 +0000http://trudolemmens.wordpress.com/?p=54Continue reading "“Don’t Trivialize Psychological Suffering” (translation response letter)"]]>This is a translation from Dutch of a Response by Johan Braeckman et al. to an Open Letter Ariane Brazan et al. re Belgian Euthanasia practices in the context of psychological suffering, published in the Flemish-Belgian newspaper De Morgen 8/12/2015. (see also the translation of the response by Ariane Brazan et al. to this letter, published in De Morgen 9/14/2015)

In an open letter, dozens of academics and health care providers voice their concerns about the regulation concerning euthanasia in the context of unbearable mental suffering (DM, 8/12). This concern is undoubtedly well intentioned but nonetheless misguided. The letter writers demand “objective” evidence of the irreversibility of psychological distress, such as an “organic injury or tissue damage.” They expect “factors that are independent of what is subjectively felt on the disease and is thought.” They wan to eliminate euthanasia based on “purely psychological suffering” from the current legislation. Particularly the word “merely” is very significant here.

We believe it is a misconception that only in cases of so-called physical suffering euthanasia is “responsible”. The demand to make suffering (and pain) “objectifiable” is a strange form of positivism and scientism. Do we have to ignore the repeated and clear testimony of people’s psychological suffering and not take it seriously as long as we cannot establish it scientifically? Do we address the ultimate request for help only when a brain scan demonstrates the suffering? The letter writers fail to appreciate not only the professional competence of doctors and therapists who establish the diagnosis, but they also want to turn the clock back by decades, by declaring patients incapable of expressing themselves about the nature and intensity of their suffering.

Hopeless suffering

Of course, suffering is subjective. How else could it be? If a person suffers, he or she is obviously the only one who can reasonably assess this experience. Suffering belongs to a subject. To ignore this subjective dimension showcases a lack of empathy. The letter writers’ comment that they are “alarmed by the increasing trivialisation of euthanasia on the grounds of psychological suffering” is therefore questionable.

In an interview with Bart Schols in The Appointment (8/12), Ariane Bazan, one of the initiators of the letter, refers to an article and the book by psychiatrist Lieve Thienpont, “Libera me: About euthanasia and psychological suffering.” The work of Lieve Thienpont apparently convinced her that euthanasia for psychological suffering must again be banned. That’s remarkable, since the book by Lieve Thienpont makes it precisely all too clear how hopeless the situation is of those who request euthanasia for reasons of psychological suffering. These are people who one often has tried to help for many years, with all the means that medicine and psychological support services have to offer. Some of these patients are so desperate that they commit suicide, with sometimes terrible and dehumanizing consequences.

Do the letter writers really think that the legislator, and the doctors who are willing to meet some (!) requests for help, tread so lightly with the request to bid farewell to life in a dignified manner? That they are not aware of the potential of various therapies and of the strict conditions for euthanasia in cases of psychological suffering? Precisely because psychological suffering is harder to measure, and a specific group of patients is not terminally ill, the legislator has added two additional criteria of good care for these patients to a euthanasia request: a second opinion by a psychiatrist and a minimum waiting period of one month.

The letter writers stick to a general discussion about the “feeling of hopelessness” that people experience when they are depressed, which for them is “in no way proportionate to the real hopelessness of a situation.” But obviously, not everyone with a depression qualifies for euthanasia without further therapeutic intervention. That is obvious. In practice, it concerns in our country about fifty people per year, a tiny fraction of the number of people going through a depression.

The letter writers’ dismissal of the hopeless suffering of this small group of people as “purely subjective”, a feeling that is an inherent part of depression, not only illustrates a lack of empathy; it also amounts to a paternalistic reflex: “You think you suffer hopelessly, but we know better. ” Incidentally, acute depression (eg. through a grieving process) usually interferes with the statutory requirement of voluntariness. In most cases of request for euthanasia, it involves other mental disorders, sometimes in combination with long-term chronic and treatment-resistant depression.

The false distinction between physical and psychological suffering

For the letter writers, the idea that the prospect of death can be part of good care amounts to “the radical failure of the mental health care sector”. This remarkable statement was a few decades ago still an often-heard objection in the euthanasia debate, also in the context of physical suffering, “Death is the enemy of medicine; when a physician reliefs someone from his misery, it means the failure of medical care.” Since then, we have come to know better. Unfortunately, the suffering of some patients is so unfathomably deep, that granting their request for an assisted medical and painless death remains the best thing the health sector has to offer. Ariane Bazan and her co-authors are apparently of the opinion that psychiatric patients’ treatments never end. That comes down to the idea that mental patients have no right to refuse treatment, which is completely contrary to the law on patients’ rights.

The euthanasia legislation is based on some fundamental philosophical principles related to a dignified end of life, in which empathy and self-determination are key. We see no good reason why patients who suffer unbearably psychologically, as unambiguously recognized by competent physicians and in line with the legislation, should be taken less seriously than those who are identified as suffering from a supposedly “objective physical” cause. By the way, people with an incurable physical illness also experience mental suffering. If we follow the logic of the letter writers, one can therefore contest the “unbearable” nature of each euthanasia request, which is a violation of the autonomy and therefore the dignity of any patient requesting euthanasia. The vast majority of caregivers today are not precipitating, nor was the legislator in 2002.

]]>https://trudolemmens.wordpress.com/2015/12/14/dont-trivialize-psychological-suffering/feed/0trudolemmensutorontoca“Remove EUthanasia on the Basis of Purely Psychological Suffering from the Legislation” (Translation Open Letter)https://trudolemmens.wordpress.com/2015/12/09/translation-of-an-open-letter-of-8-december-2015-by-belgian-psychiatrists-psychologists-philosophers-and-others-re-psychological-suffering-in-belgian-euthanasia-legislation-translation/
https://trudolemmens.wordpress.com/2015/12/09/translation-of-an-open-letter-of-8-december-2015-by-belgian-psychiatrists-psychologists-philosophers-and-others-re-psychological-suffering-in-belgian-euthanasia-legislation-translation/#commentsWed, 09 Dec 2015 14:20:31 +0000http://trudolemmens.wordpress.com/?p=2Continue reading "“Remove EUthanasia on the Basis of Purely Psychological Suffering from the Legislation” (Translation Open Letter)"]]>This is a translation of an Open Letter of 8 December 2015 by Belgian Psychiatrists, Psychologists, Philosophers and Others re Psychological Suffering in Belgian Euthanasia Legislation, published in De Morgen, a Flemish newspaper, asking the Belgian legislator to remove the option for euthanasia on the basis of purely psychological suffering. I used google translation to create a quick basis, and corrected that rough translation based on my own knowledge of Dutch (Dutch is my native language). Here is the original Dutch version.

REMOVE EUTHANASIA ON THE BASIS OF PURELY PSYCHOLOGICAL SUFFERING FROM THE LEGISLATION.

For the first time since the adoption of the law in 2002, a decision to allow euthanasia – the case De Moor / Van Hoey – was challenged by the evaluation committee and forwarded to the public prosecutor. The Australian broadcaster SBS made a documentary about this case and about the conversations between the patient and doctor. Another poignant video report was recently made public by The Economist, involving a 24-year-old young woman from Bruges, who ultimately declined the execution of her euthanasia request, which had been granted, and which was based on psychological distress. (24 and Ready to Die).

In our open letter in the Artsenkrant (September 2015) we already drew attention to the legal uncertainty for the doctor in cases of euthanasia based on purely psychological suffering. In this opinion piece we draw attention to its particularly problematic character, in particular the impossibility to objectify the hopelessness of psychological suffering.

One would expect that the untreatable nature of this condition is supported by, for example, indications of an organic injury, or of tissue damage, in other words, with factors independent of what is subjectively felt or thought as a result of the disease. Such objectification is problematic in mental suffering.

Let us be clear: mental suffering is real and can be at least as severe as physical suffering. What is unique, however, is that you can only rely on the word of the person who is suffering to evaluate it. And this is clearly a good thing, because he or she is the only one who knows how much it hurts at that precise moment. At that moment indeed … because when we suffer psychologically, we are often convinced that no other future is possible. It is often precisely these thoughts that push a person into the abyss, since as long as there is perspective, one can usually tolerate very much. We see that some who were first declared terminally ill eventually abandon euthanasia because new prospects appeared. In a paradoxical way, this proves that the disease cannot be called incurable.

Depression is today the most common mental illness: according to estimates by the World Health Organization one in seven people have to deal at one point with serious depression. If we connect these figures to the fact that hopelessness is one of the central features of a depressive phase, it is clear that the feeling of hopelessness is in no way commensurate with the truly hopelessness of a situation.

In contrast to diseases that are the consequence of tissue damage, mental suffering is connected to a change in functioning – and not a deterioration of tissue. This difference is essential because such dynamic changes, by definition, can and do revert, and sometimes quite suddenly. Thus we see that some people who were first declared untreatably ill and who received on that basis permission for euthanasia decline to exercise their option because new – albeit fragile – prospects appeared.

In a paradoxical way, this proves that the disease cannot be called incurable. The subjective assessment of one’s own perspective in the context of mental suffering therefore offers no stable support to make an ‘incurably ill’ verdict.

The conclusion is clear: the current law assumes wrongly that there are objective clinical criteria for psychological suffering that might justify euthanasia. It is for this reason that euthanasia on the grounds of mental suffering alone cannot be regulated by law.

Some also defend the thesis that the mere offering of death as an option can cause a positive change and can therefore also be considered a component of good care. In our view, however, this inevitably entails the radical failure of the mental health sector. The use of ‘death as therapy,’ possibly up to the point of actually even performing the requested euthanasia, implies a priori renouncing what therapy still can and should be offering: the inexhaustible opening up of new perspectives.

As representatives of the various directly-involved professional groups, from different parts of the country and from across the different ideological fault lines, we are alarmed by the increasing trivialisation of euthanasia on the grounds of mental suffering alone. We believe that this situation is intrinsically linked to the concept of an act which is based on subjective criteria. That is why we insist that allowing euthanasia based on purely psychological suffering be removed from the current legislation.